The power of words: The IACC works to reconcile different perspectives on autism

The task of this week’s meeting of the Interagency Autism Coordinating Committee (IACC) in Rockville, Md. was to approve an update to the IACC’s Strategic Plan for Autism Research. Most of the updated sections had been approved at earlier meetings, but the committee still had to grapple with the introduction, which contained several sticky phrases. The committee is a diverse group of people ranging from a parent who believes that autism is the result of injury caused by toxins in our environment to an adult on the spectrum who views autism as a natural part of our human diversity. Given the wide range of perspectives, words matter a lot.

For example, the committee all agreed that the plan should convey a sense of urgency. Autism represents a serious public health crisis and immediate action is required. So far so good. But how should the plan convey that sense of urgency? As the discussion began, a lively debate ensued about a proposed revision to the plan’s opening paragraph, which was adapted from the Autism Speaks’ website:

Today, autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, and the increasing numbers of children being diagnosed with autism has created a national health emergency. In a September 30, 2009 speech at the National Institutes of Health, President Obama specifically cited autism, along with cancer and heart disease, as one of three health conditions targeted for major scientific research investment through the American Recovery and Reinvestment Act. The President expressed his hope that research into genetic and environmental factors would result in strides in early intervention, treatments and therapies to help people affected by autism achieve their fullest potential (hot button words bolded).

The words that some members were concerned about were “childhood cancer, juvenile diabetes and pediatric AIDS.” They objected to the notion of comparing autism to diseases such as these and felt such a comparison was disrespectful to people with autism. After all, autism is not a terminal disease like cancer, one person pointed out. Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism. The discussion continued until Tom Insel finally pointed out that the committee had spent 30 minutes discussing the first sentence of the plan, and we still had a lot of work to do. A vote was then taken and the revision was adopted.

Similar issues were raised about the following passage, which was part of last year’s document:

The cost of ASD to affected people, families, and society is enormous. A great majority of adults with ASD struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Compounding these stressors, families with a child with autism typically lose income, possibly as a result of one parent leaving the workforce in order to care for and meet the special health and educational needs of the child. The cost to society of ASD is currently estimated to be $35-$90 billion annually, the higher estimate being comparable to Alzheimer’s disease(hot button words bolded).

Again, some committee members asked whether we should we compare ASD to Alzheimer’s disease and asked what kind of message we send to people with autism when we characterize autism as a “burden to society?” This passage could be alienating to parts of the autism community, it was pointed out. Other committee members argued that people should be made aware that families do carry a substantial burden, both financially and emotionally, especially when these families don’t have adequate services and interventions. They noted that it is important to know how much autism costs society, as this helps justify the need to increase our investment in developing better interventions. By a slimmer margin, a committee vote kept this passage in.

Less controversial but still garnering substantial discussion was the proposal to add a cross-cutting theme on the ethical, legal and social implications of autism research. The proposed language was:

As more progress is made in the autism research arena, new ethical, legal and social implications of ASD research will need to be considered and taken into account by researchers and consumers of research findings. In particular, genetic research poses unique ethical risks that require consideration both within research projects focused on other questions and in efforts dedicated specifically to exploring these ethical challenges and the appropriate responses to them. As such efforts are undertaken, it is critically important to include the autistic adult community, family members of individuals on the autism spectrum and other stakeholder groups within the discussion (hot button words bolded).

The committee was in unanimous agreement that studying the ethical issues associated with autism research is very important. At an earlier IACC meeting, I had proposed adding a research objective to this effect. The committee decided, however, that virtually all research on autism poses ethical risks and benefits, whether that research is on genetics, early screening or interventions. Furthermore, it was decided that, whenever possible, all people with autism, not just adults, should be part of the discussion about the potential risks and benefits of research.

Finally, the committee struggled with whether to add another new cross-cutting theme, one focused on self-determination. Self-determination refers to the ability to consider options and make appropriate choices regarding where to live, work, and spend one’s leisure time. Although in theory and spirit most people on the committee agreed with this concept, some expressed the concern that it was unrealistic to expect a severely impaired person with autism to live a self-determined life. “Could we perhaps substitute the phrase ‘supported self-determination,’” one committee member asked. When consensus wasn’t easily reached, the committee entertained deferring the decision until they had more time to deliberate and understand the implications of adding such language to the strategic plan. Finally, however, a vote was taken and the proposal to include the cross-cutting theme of self-determination was adopted by a slim margin.

Unlike some other committee members, I felt confident that adding a cross-cutting theme on self-determination would strengthen the strategic plan and argued strongly for its inclusion. As a clinician who has worked for years with people with autism of all ages, including those who are severely affected, I have witnessed the power and success of empowering all people with ASD with self-determination. This begins early on with teaching young children with ASD how they can effectively express their needs, wants and preferences. By doing so, such a child will have stronger self-esteem and be happier, more motivated to learn, and more likely to succeed. A study of two types of applied behavior analysis, one in which the goal and reward was chosen by the therapist and another in which they were chosen by the child with ASD, found that allowing children to make choices and work with preferred materials resulted in more highly motivated children and faster learning rates. Similarly, I have worked with severely affected nonverbal adults whose only option for expressing their dissatisfaction with their lives was to become aggressive or noncompliant. Offering these adults appropriate choices and control over how they wanted to spend their work and leisure time allowed them to live happier, more productive lives with little need for disruptive behavior.

There is often the misperception that self-determination means that a person is entirely autonomous or independent. All of us are dependent on others, and none of us is entirely autonomous. However, expressing one’s preferences, making choices, and having a sense of control over one’s life is not only a human right, it is an inherent part of being a healthy, happy human being.

I left the meeting feeling that the IACC has come a long way. Although there was disagreement among its members and people felt passionately about their positions, people treated each other with respect. Unlike the stalemate we are witnessing in our federal government with parties strongly entrenched and unwilling to “reach across the aisle,” committee members were more flexible with different subgroups of people coalesced around different positions. It was clear that, although we each come from a different perspective, we are all working toward a common cause: improving the lives of people with autism and their families. Working together, rather than against, each other can only accelerate our efforts toward this common goal.

Unfortunately, it seems like my worst fears about the IACC are being realized. The “neuro-diversity” crowd, many of whom fundamentally oppose any research to find a cure for autism spectrum disorders (irrespective of the disengenuous language they may use), are apparently exerting influence over research priorities via this body. If ND affiliated aspies want out of the ASD diagnosis, more power to them. No research, no cure, no funding, no problem. Supports? Fine with me.

However, throwing roadblocks in front of legitimate scientific inquiry to alleviate the obvious pain, suffering, and debilitating symptoms of some ASD’s that so many in our community experience is the ethical trangression in my view. Unlike the ND-er’s agenda of blocking research, our community needs to push full speed ahead for scientific inquiry and therapies which (hopefully) someday may lead to a cure for some on the spectrum.

Thank you for your comments on the IACC meeting. I could only watch some of it. The strategic plan is very disappointing. A clear focus on developmental language disorder and its underlying neurological basis should be included. I submitted written comments suggesting even a brief amendment to highlight the need for research on the language disorder, which perhaps the committee feels should go without saying.

Also, the non-response to stakeholder comments is very disappointing. More time should be allocated to discussion of comments submitted. I have submitted pages of evidence on the vulnerability of the auditory system of the brain, and how it can be injured by all of the known causes of autism. My ideas may be wrong, but then the counter-evidence should be cited.

I have to agree with the comments of Dadvocate above. Autism is a catastrophic and tragic developmental disorder. Failure to learn language is not to be dismissed as just another aspect of human diversity.

With so many different perspectives and viewpoints on Autism and Related Disorders out there I can see why it is difficult to put a plan together that would make everyone happy. Perhaps for now we should just view it as progress, with the idea that something is better than nothing. Thanks for posting.

It is nice to hear that varying viewpoints were given consideration. Many of us (yes me) could be more respectfull to each other. But it is long past due that research which leads to real results take the lead over bad and foolish arguments. We need to stop chasing the wrong rabbits down holes. We don’t have the luxury to push research based on our personal biasis when the facts don’t square with them. Notorious examples of not well thought out positions continue as noted above- Wy would we talk about the cost to society unless your willing to also talk about how much is funded by parents?

We’ve allowed ourselves to be fractured for years- Enviromental Vs. Genetic, Vaccines Vs. Not, Democrats vs Republicans, adults vs. kids, nds vs. anybody else. If we have common agendas then the commonality needs to drive whats done and what is not. Divying up the enegy in order to keep the mosaic together wont get us there- we need the win win. Targeting our common advocacy is crucial if we are going to succeed. We need to come together with purpose not difference.

“Others noted that the comparison was meant only to convey the scale of the problem, not to imply that autism was a terminal disease. They said that the comparison was meant to convey the huge number of people who are affected by autism.”

If this was only meant to convey the size of the problem, it wouldn’t have taken 30 minutes to find substitute language. One could say, “there are more autistics than the population of Washington DC, Denver Colorado, and Miami Florida” and be done with it.

It is possible to convey the needs and the gravity of the situation without language that demeans the very people the IACC is trying to help. For example, one can make it clear that autistics have great need for medical care without implying that autistics are somehow less due to the need.

How is “autistic adult community” a hot button item? Did people disagree that autistics should be involved within the discussion of the ethical concerns in autism research?

Dadvocate grossly misrepresents the position of the autistic self-advocacy and pro-neurodiversity movement. No serious voice within the movement argues that we should do nothing about the disabling aspects of autism. Failure to develop expressive speech — to use the example cited by Eileen Nicole Simon, above — *is* a profound disability. We argue for making AAC devices, and training and proficiency in using them, available and accessible to all individuals who do not naturally develop expressive speech. That is an investment in the here and now, in directly — and *vastly* — improving the quality of life of the affected individual and his or her family. It steers the individual clear of resorting to maladaptive behavior as the only means of communicating needs, distress, fears, etc. That, to us, is *way* more valuable than spending yet more money on theories of causation and silver-bullet “cures”. Mitigating true disability does not make the individual non-autistic — it makes him or her more effective at leading the kind of life they should be able to live. Part of the solution needs to be breaking down barriers, so that social behavior differences that do not violate others’ boundaries do not become grounds to deny employment or participation in other aspects of life, or grounds for bullying that society gives a wink and a nod to and permits to continue. Sooner or later, some or all of the issues our movement is concerned about will become concerns for *you* and your loved ones too. Better you should stand with us in what we *do* push for, than spread pernicious untruths about what we supposedly stand against.
And — by the way — I am a *parent*. A parent of an autistic young man and a young woman in the broader phenotype. They each have different struggles. Each is important to me. I insist that you stop misrepresenting what I stand for. And I call upon Autism Speaks to stop enabling such misrepresentation.

I agree with Phil’s statement – I am both an adult on the spectrum – one who has language but communicates far better online or in writing than in social settings and a parent of kids all along the phenotype. I fail to see how catastrophizing provides and kind of help in dealing with a multidemensional issue. And insulting Autistic adults is just plain lacking in social sensitivity (which the NT community keeps telling us is OUR failing, hmmmmmmm…….)